So about me, I’m a 43 year old male and about a year ago I noticed that I had an increased tendency to bite my tongue when speaking. I know it happens from time to time but this was occurring three, maybe four times a week.
So I checked my tongue and noticed a white patch. Naturally google informed me that leukoplakia was a possibility so it came as no surprise when my GP duly diagnosed it.
I was referred to an oral surgeon and had a biopsy which turned out negative however we’d still monitor it.
February this year and the specialist noted a lump, which I knew was there because I still bite it from time to time but as I had a previous negative test then I wasn’t too concerned. Referred for CT, PET & MRI which returned a ‘possible early stage carcinoma’. Again not too worried, but the following biopsy confirmed it was in fact a tumour. It’s only a T1N0M0 and I’m okay with that (as far as diagnoses go) however what threw me was the magnitude of the surgery: tracheostomy, removal, neck flap surgery to remove the lymph nodes and further surgery on my forearm to steal some artery to resupply blood flow to the face.
I was only diagnosed Friday 11/03 and you know, I’m okay with everything now. The hardest part now is the uncertainty about when surgery will take place and the fact that my two boys (age 4 & 5) will have to see me in such a state in hospital.
I know things could have been much worse and I am thankful that I noticed a change and acted on it rather than letting it slide like I tend to do with most other health concerns.
Pretty much just sharing my story and to say don’t ignore something about your body that isn’t quite right as you never know what the outcome may be!
Apologies for the novel!
Good on you for getting it checked out and finding this relatively early.
I'm very sorry to hear about your diagnosis, but thank you for sharing your story.
Children bounce back.
Personally, I found that telling them the truth was the easiest way. Not filling in all the gory details, but just be honest with them about what is going on.
How long is your treatment going to take?
Well I’m relatively lucky in that surgical removal ‘should’ be all that is required.
I haven’t had my appointment with the surgeon who will carry out the operation as of yet, however my Dr has told me that I’ll be in hospital for 2 weeks but what happens from there I’m still unsure of.
I have spoken with my kids, to tell them that Daddy needs to go to hospital soon, and right away my eldest asked ‘is that because of your tongue?’ so he is at least aware that something is going on. As you’ve said, I haven’t gone into the gory details however I think he has heard enough to know the seriousness of the situation. My youngest son is just mad, in a crazy way - when I said I’d be in hospital for 2 weeks, he just said, ‘2 weeks, that’s not very long at all’!
I know they’ll be okay as my wife was hospitalised last year for 7 nights so they know what to expect.
Guess we’ll just wait and see now!
An update - surgery was scheduled for May 2nd however I discovered that my private cover is inadequate for this type of surgery so I have a couple of options: front up the cash (12k + anaesthetist) or wait on availability in the public system with the same surgeon whom I met last week.
Spoke with my GP also who said that it is not an aggressive tumor and won't grow overnight so I'd be happy to wait 2-3 months, maybe a little more but I think if it exceeds 5-6 months then I might just have to pay and be done with it.
Health provider did say I could upgrade and have their doctor's evaluate the 'pre-existing' condition exemption (meaning a 2-month waiting period rather than 12 months) but I feel that because I was first alerted to this almost a year ago, despite it only being confirmed cancerous a few weeks ago that they'd reject it so I'm not really even considering that right now.
So feeling a little less optimistic right now but we'll see what the surgeon says and just go from there...
So things escalated.
7:30 Monday morning April 11 I received a call asking had I eaten? Luckily for me I WFH and tend to eat mid mornings.
Well a whirlwind of emotions and fears ensued and within 2.5 hours I was on the operating table prepping for partial glossectomy, radial free flap, neck dissection and everything else this op entails.
Operation was a success and I was out of ICU and on the wards on Tuesday. Pathology came back saying no cancer in lymph nodes or surrounding tissue but depth of incision was 6mm… First few days found it hard-mentally. Then Thursday just gone I started walking around the hospital, and have repeated this numerous times a day since then.
Friday afternoon started to talk / verbalise whatever you want to call it with upper cuff trache inserted and have shocked doctors at my progress.
Hardest part though is the lack of sleep and loneliness I feel at night. I haven’t seen my two beautiful boys (5 & 4) yet as it is too confronting for them just now.
I just wanted to thank this community for giving me a voice when I needed an independent vent
Much love xox
Hi Salival, Wow that’s great news really! At least you didn’t have a long time to dread the op and no cancer spread!! So happy for you💕. Hopefully it’s not too long until you can see your boys again😘. LindaG
After 9 days in hospital I was discharged so that I could spend my birthday with my family. It truly was the greatest gift of all!
I’ve since been informed that I need to undergo radiation treatment as the depth of the tumour was 6mm and typically radiation is recommended wherever the depth exceeds 5mm.
I’m at 3 weeks & 1 day since surgery and am feeling good - I can eat most things now however some solids can be tricky (bread and other foods which tend to get stuck in the roof of the mouth).
I’ve lost around 5kg since surgery which probably isn’t desirable leading up to radiation however I’m still at 90kg so there is still plenty of me and I’ve never eaten so much in my life - only difference now though is fewer carbs and healthier eating all round.
I don’t know all the details of the radiation yet which is kinda daunting and I’m guessing that this stage will be tougher than the surgery.
Has anyone here been treated with radiation on the tongue? What can I expect and do you have any advice / tips for me to follow?
Hi @Salival ,
I've read thru your posts & I'm glad you've come thru your surgery well. Captain Australia started a post on this sight talking about the side effects of head & neck cancer treatments.
If you go to the 'Treatments & side effects' thread, I've floated the conversation at the top for you. There are a lot of people giving their experiences on that thread, so I hope it will give you an insight.
Good luck with everything.
I appreciate both your response and linking me to a similar experience.
I guess every situation is different however it is still valuable information for me to digest prior to the start of my treatment.
Many thanks 🙏🏼
Be part of this supportive community